Helping My Partner with Ankylosing Spondylitis

jaryg27
jaryg27 Member Posts: 2
edited 17. Aug 2018, 05:53 in Living with Arthritis archive
Hi everyone.

Firstly, although i'm mostly querying ankylosing spondylitis here, if anyone with an alternative form of arthritis has information they can share, i'd appreciate hearing it!

Secondly, pardon my ignorance on all issues arthritis and AS. I'm rather new to this.

I'm in a relatively new relationship with a woman who has recently been diagnosed with AS. She's been perfectly open about it, and we've discussed the illness in depth. She's a positive, capable, and courageous woman, and i know she's perfectly capable of dealing with AS by herself, but i'd like to do my part to help her, too.

I'm looking for advice from those with more experience than me as to how best i can support her.

For AS sufferers - what do you require, or desire, from your partner in terms of the care, assistance, and emotional support they give you? Is there anything your partner does for you that you find particular helpful?

For partners of AS sufferers - what actions, both physical and mental, have you found to be a particular help for your partner? I've read many stories of sufferers falling into depression, becoming introverted and distancing themselves from their interests. Is this common, and what might be effective in avoiding this?

Thanks in advance for any information or advice. It's greatly appreciated.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,638
    edited 30. Nov -1, 00:00
    Hi jaryg27,
    welcome to the community. We are here to listen and support you as best we can. We have a section on our website about Ankylosing Spondylitis here https://www.arthritiscare.org.uk/do-i-have-arthritis/a-z-of-types/48-ankylosing-spondylitis plus a factsheet which you may find useful.
    We also have some personal stories of living with Ankylosing Spondylitis, here is a link to one for you https://www.arthritiscare.org.uk/our-services-and-support/stories/818-rowena
    Caring for someone can also be challenging as you both adapt to changes in the condition so it worth ensuring that you get enough support for yourself. Our Helpline provide a free confidential safe place for you to talk and share. The phone number is 0808 800 4050.
    Lastly I am confident that our member will be able to share with you the things they find the most useful in terms of being supported by their loved ones. Please ask as many questions as you like, that is what we are here for
    Best Wishes
    Sharon
  • Airwave!
    Airwave! Member Posts: 2,424
    edited 30. Nov -1, 00:00
    Pain is pain at the end of the day, no matter how its caused. Most would agree that no support is needed on the good days, we are self aware and strongly independant to the point of obstinance.

    Arther tends to drag our moods along and tows our feelings along with him, we need support on those bad days, a touch of guesswork might help some days😊.

    arther affects us all in different ways, so although I would encourage you to learn about him from AC handouts it might not be the whole answer and a look in on this forum and its many subjects may suggest a practical narrative that helps.

    There are so many types of arthritis but they all cause pain and discomfort and these are the things that need to be dealt with rather than in some cases a particular ailment.
  • stickywicket
    stickywicket Member Posts: 26,934
    edited 30. Nov -1, 00:00
    I'd endorse what Airwave has written. I have RA and OA, not AS but, on here, what is common to all is pain and fatigue.

    It's lovely that you want to help but it's hard to say what you can do as we're all individuals. Many of us are fiercely independent (Just ask Mr SW :wink: ) and don't take kindly to people doing things for us which we are perfectly capable of doing for ourselves. Unfortunately, the goalposts do move quite frequently so what we can do one day isn't necessarily what we can do another.

    It sounds as if it's quite early on in your relationship so I'd say watch and learn. And listen. Some days we just don't feel able to go out partying or even to somewhere where we'll be sitting most of the time. But we don't like letting people down either. So, if she says no just accept it.

    Mr SW is a brilliant, conscientious visitor whenever I'm in hospital and great at cooking and...erm....less so at cleaning :wink: when I'm just out. Once I'm officially better that's it. He's back on the golf course :lol: He's been a party animal all his life and still doesn't quite get it (after 50 years of marriage to an arthritic :roll: ) that I can't cope with all the visitors and visits that he loves. On the other hand, when I see men who are models of attentiveness to their frailer wives / partners I don't envy those women one bit.

    Honestly, it's a nightmare :lol: But, if you really care about each other, you'll find your own relationship and your own ways of dealing with AS. She's trusted you enough to tell you about it. That's good. Several people on here have hesitated to mention their arthritis to new partners. I do believe that honesty is the best policy. If you have questions, ask her. But, at the right time. Choose it well. She sounds as if she's learned to live with it and doesn't need a cook, cleaner or handyman to do all the difficult jobs. She just needs you to be aware and considerate and, I'm sure, wants to be the same for you too. I do hope all goes well.
  • stickywicket
    stickywicket Member Posts: 26,934
    edited 30. Nov -1, 00:00
    jaryg27 wrote:
    I've read many stories of sufferers falling into depression, becoming introverted and distancing themselves from their interests. Is this common, and what might be effective in avoiding this?


    Me again. I've just re-read this bit. You're right. Depression is fairly common on here. I've been fortunate but re distancing ourselves from former interests, it might just be that those interests are now providing more pain than pleasure. I've made a point of always, when having to give something up, taking on something new. That's how I discovered the pleasures of Riding for the Disabled, Wheelchair Walks (some walking, some riding), Composition ( did an OU module) and several other things. I maintain that the more inflexible the body is, the more flexible the mind must be.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    My arthritis began in 1997 when I was 37, after seven or so years together, so our situation is different to yours. It seems to me that you two have made a good start in talkng about it and I hope that continues but not to the point of obsession. Like Princes Di there are three in our marriage, him, me and arthritis but the latter is not allowed to dominate, yes, it has brought about great changes and how we thought things might be but life always holds that possibility.

    My disease is not visible so although I look very well I am not. I am in constant pain, constantly tired, lack stamina and energy but life can be lived reasonably well within my limited parameters. I have psoriatic and osteoarthritis in all the useful joints so it has had an impact on things but my husband is patient, helpful, considerate and never puts me under pressure to socialise. I have never been afraid to ask for help and don't like people trying to help without asking because this usually causes me more work :wink: Keep the lines of communication open, read The Spoon Theory and There's a Gorilla in my House as they give good explanations of living with a chronic condition.

    Depression is an issue, I take a small daily dose of an anti-depressant to help me cope. Being mentally stronger doesn't mean I am physically stronger but I can cope better with the setbacks, frustrations, irritations and annoyances my condition causes. It is true to say that my husband and my friends have no idea how I feel and how difficult things can be , they cannot comprehend how demoralising and exhausting the constant pain and tiredness is and can be but as they are getting older, and the the vicissitudes of age are beginning to hit home I am allowing myself the odd secret smile . . . . DD
  • stickywicket
    stickywicket Member Posts: 26,934
    edited 30. Nov -1, 00:00
    Another thought.

    There are not many 'regulars' on here with AS. I'd count that as a good thing. It probably means they are out living life instead of typing on here :D

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